The Final Stretch...we think

Kiera seems much better. She's off her Ketamine (a horse tranquilizer by the way), and has been improving since passing a blood tinged mucous plug on Wednesday. She still has some weaning to do on her Terbutaline, Ativan, and Fentanyl before we can take out the IV's. The rest of the meds can get weaned at home. She's coming down on vent settings, so hopefully we can attempt putting her back on the home vent soon. The big two will be to see how she does without the Terb and to see how she transitions to her home vent. I think with any luck we should be able to get her home by Thursday. That's at least the goal. She's awake and pretty pissed off about being in the hospital. She cries on cue every time I enter the room. She's pretty weak, but it's hard to tell how much of that is the Terb. It may take a few weeks for her to get back to her crawling and cruising self, but I think she'll do best with that at home. She was pretty cute Thursday when I brought the boys in, and she tried to play ball with them. She definitely lacks her former coordination, but she's determined. Yesterday I laid the ball on her legs and she would kick it. She thought that was pretty fun.

Breaking News: Kiera's poops 2/3 her birthweight!

Okay...maybe it's the deplorable state of my TV shows lately, but this I found entertaining. Kiera's bowels were stopped up because of her meds, so we were all thrilled when they started moving again yesterday. The day nurse was so excited to report to the other nurses that there had been an "explosion." To top it off, tonight the nurse told me, after another explosion, that her diaper weighed 422 grams. It occurred to me...hey wait...didn't she weigh that much at birth? No, no...it was 680 grams a birth, silly. I am saddened now that I haven't been weighing her diapers regularly. I am sure one of those home explosions, or diapers ignored by daddy till mommy gets home, must have hit the record breaking BIRTHWEIGHT DIAPER, and we missed it! How could we have fallen down on the parenting job so completely? What a missed opportunity for a scrapbook page! An event that so few cherish or even achieve! Why...I'm sure there must be a Hallmark greeting card to celebrate such an occasion.

It is possible I have lost my mind.

"You didn't see anything...it was the cat"

This one is the wallpaper on my desktop and just cracks me up. Funny that she thinks mommy's piano is forbidden fruit. Her red one holds her attention for a while until the big one catches her eye.

The best SMILE picture that gets me through the day

This is the picture I have framed on my fireplace mantel that keeps me going every day. Hopeful Kiera will get to wake up tomorrow and flash me one of these smiles. My realtor wants me to clear my mantel for staging the house, but how can I possibly live without this picture on display? I know it's really that they just want my house empty so it shows better, but darn it...I just need to pray that the right person sees it who can sift through the noise. I've gone about as fer as I can go.

Some happy pics instead of pics of what Influenza A looks like in Kiera.

Well, I don't have a pic to post, but most of you probably wouldn't want to see it. Here are some cute ones I had on this computer- not my favorites- but they'll do to lift the mood. Kiera tested positive for Influenza A (even though she had a flu shot this season), and her lung culture showed her old friend serratia. We had an eventful weekend. She stayed on the anesthesia ventilator until Monday afternoon, and is now back on the 840 vent but still sedated and paralyzed. She's back to the IV tree of about 7 or 8 IV pumps. She's not fantastic yet, although her left lung has opened back up a little. She's still on a rate of 40 and 60% oxygen. She's got a central line in now, done under anesthesia, for her antibiotics and started appropriate antibiotics for the serratia yesterday. She's getting fed a very teansy weensy bit to try to get her gut moving again. To add fuel to the fire, I think I have the flu now too. I stayed home today in order to rest and try to get well. I couldn't get into the doctor, but will try tomorrow. At least Kiera was sedated all day, so she probably didn't notice my absence. This is very unreal. We've been babied since October and are out of practice for this kind of worry again. I just have to keep looking at pictures of her smile.

Kiera's left lung is collapsed

I guess after her ultrasound today, they have determined that her left lung is actually collapsed. They have put in a drain to drain off fluid from her chest around the lung to help it open up. They are also lavaging and suctioning her lungs to try to get plugs out to open it up. So she continues to limp along on her bad lung.

On the good side, her blood gases are good, and she still has negative cultures. She's satting okay and is comfortable, of course, since she is totally sedated. The pulmo and intensivist are brainstorming over treatments to open up her lung. She's on steroids and will start her mucomyst and pulmozyne to try to break up mucous plugs. We'll see.

Up to the MINUTE news: Kiera seems to have built a tolerance to her albuterol and overnight has developed a huge pneumonia in her left lung (which is normally her GOOD lung). Her left lung is pretty whited out on x-ray, worse than I have ever seen it. She has been put on an anethesia ventilator for a few days which is a VERY UNUSUAL procedure. The doctor said that "Maybe one kid every year needs this." Makes sense that that ONE KID is MY KID. We are hopeful and happy that the doctors are taking charge of the situation. She will stay sedated like this for days, probably. She also just started a blood transfusion because she's anemic. The RT joked with me that she needs the blood because she has started matching the sheets. We did another trach culture (an N-Bal) and will see if anything grows out. HOPEFULLY this is a bacterial pneumonia that we can treat. Keep praying. She's in a pretty tough spot right now, and we are very scared.

Slight freak out, but doctors are reassuring...(AND "The Watchmen" is NOT a kid or teen friendly movie!)

Kiera (and thus, her parents) had a rough night, and is sedated and on paralytic right now. We were both really scared that we were back in "coma-land" and both had bad dreams all night. I woke up at 6:30 AM and couldn't get back to sleep, so I just came in to the hospital and caused confusion in those who have never seen me before noon, especially on a Saturday. I think they thought I might react to the sunlight like a gremlin or vampire or something. :) Anyway, I told the doc that we were afraid Kiera might die, and she said that she is not at all worried about that and that she would tell me if she was. So, the good news today is that her blood cultures seem to still be negative on the current antibiotic and her CRP levels are down which means her body isn't having to fight infection as much as before. She is also getting full feeds right now. She is a little anemic and may get a blood transfusion, which may help her respiratory status. We'll see what Dr. Glasser thinks when he comes in. She is back on her pulmonary hypertension meds, and right now she isn't running any fevers. So...I'll just dig my feet in and keep trudging along till we get her home.

Now for the most important update:

DO NOT TAKE CHILDREN OR TEENAGERS TO "THE WATCHMEN"!!!!!

Jer and I went to see "The Watchmen" last night, and I knew it was based on a "dark" comic strip, but I expected "dark" like "Batman Begins." We did not take our 17 and 15 yr olds, mostly because of their grades, not because it ocurred to us that it might not be appropriate. This movie contains male frontal nudity, sex, F-words, dismemberment, a violent rape scene, women beaten up, and gory violence. It is VERY ADULT in content. It is an unusual movie, but was not at all light hearted or entertaining (which we had hoped for to de-stress a little). We would have been better off at a drama than this movie. I had to turn my head from the screen a few times, and two couples(of maybe 12 in the theater) left before the movie was over. I normally don't get myself in a tizzy over movies, but I feel it's important to make sure you know what you're getting into on this one, before you end up sitting there with a teenager (or worse-a younger child) and having to decide whether to stay or go and what kind of talk you'll have to have on the way home. Stay home and watch "The Incredibles" again, and enjoy yourself.

So much for a night out of entertainment to take our minds off things. Wish I'd gone to see "Race to Witch Mountain" instead.

Surgery is over, Line is out, Kiera is sedated...

After 2 or 3 postponements for emergency surgeries for other patients this morning, Kiera finally had her surgery to remove her central line in her PICU room instead of O.R. around 2:00PM. She's sedated right now and doing okay although I wonder how long her jugular I.V. will stay in for her antibiotics. The surgeon confirmed that her veins are pretty much shot leaving her very few choices for I.V. locations. They are watching her closely to make sure she doesn't get septic. It sounds like they may keep her sedated for a few days, but I need to talk with the intensivist still. She'll also be going back on her pulmonary hypertension meds (viagra) which she has been off of since June, I think. I don't know yet how long she'll be in, but I would guess 5 to 12 days still, especially now that we no longer have the option of treating her with I.V. drugs at home. We also need to see if she starts doing better. She definitely was still spiking temps this morning and having weird respiratory problems, so we'll want to get her back to baseline before running her home. Good news is that yesterday's blood culture was negative, so I think that means the current antibiotic is working. She was certainly feeling well enough today to push us out of the way when we came between her and her TV.

Kiera's having surgery in the morning...

Okay, here's a quick update from Kiera's hospital room on my ridiculously SLOWWW laptop. I have spent the last hour just getting to this spot. Kiera's on the 840 hospital ventilator now. Kiera's port-a-cathetar has resulted in a staph infection in her blood, and it has drifted into the atrium of her heart. She's scheduled for its removal in surgery tomorrow at 7:30AM. She's continuing to spike high fevers, and at present, is not responding to fever reducers, so I have been sponging her down, and the nurse is looking for a fan. Her echocardiogram this morning showed 2/3 systemic pulmonary pressures, so I am worried that maybe her pulmonary hypertension is back. Hopefully, it's just a side effect of the drifted cathetar, but I guess we'll see on the echo after it's removed. She's also on continuous albuterol nebs, a versed drip, and now intermittent doses of ketamine. She's pretty lupy, but happy at the moment with her Elmo video, "What Makes Me Happy." Hopefully, after the line is removed, we can get rid of this blood infection, and get her home. We just have to pray they can get a good peripheral IV in tomorrow, and that it stays in long enough for the antibiotics to take effect. So far, the antibiotics up until now don't seem to have made a dent yet.

I'm freaking out a bit, and sad to be in again, and for what looks to be a significant amount of time. I'm sleeping at the hospital tonight so I won't miss the surgery. We all know what a great morning person I am.

Please pray for everything to go well tomorrow.

Therese

Kiera in Hospital...I'm pooped.

Sorry I can't stay on long tonight. I really feel totally and utterly drained.

Kiera had to be admitted yesterday afternoon after a fever induced seizure at home. She seems on the mend, but we are waiting on the results of her EEG and blood and trach cultures. Hopefully, once diagnosed we can treat her at home. She is definitely unhappy to be back in the hospital. She woke up there after the ambulance transport, looked around, and just cried and cried. The doc said the seizure wipes out their short term memory, so she probably didn't remember the event and didn't even know why she was there.

In addition to every other stressor in my life, I got hit by a speeding camera on the way home from the hospital tonight. I was probably going 40 (while lecturing a teenager on why he should do homework) in a 35 that I believe is only 35 in order to trap people into collecting money for the city. I want to just hand them my arm and dare them to get in line and take it through a vein.

Then I came home to a scorched teapot of cider I had left on LOW for showing our house and now have a smoky burnt smell to deal with. At least my brother caught it when I sent him earlier, and I still have a house...and a brother. I'm sure that would have mixed well with the oxygen tanks.

I am so done.

Therese